Why Dont Doctors Listen to Women?

It’s early 1983. I’m a young man of 22. I’ve had symptoms of something for two weeks (The term “CFS” would not be coined for five years).

My GP has diagnosed it as "a post viral process," but, as my symptoms intensify, he refers me to a Doctor of Internal Medicine. I describe my symptoms, many of them neurological, to the new doctor. He does a physical and finds nothing wrong. I tell him that I feel like I’ve got some sort of weird infection. He considers this for a moment – and then says,

“Um, do you like...science fiction?”

I’m thinking to myself, “What the Hell?”, but I say, “I guess so.”

He says, “Um, science fiction like…The Andromeda Strain? ”

Waiter! Check please!!

[On the pluse side, when I was hospitalized by a nuerologist the following week, Dr. Andromeda Strain did stop by my room to make sure that he hadn't missed something I could potentially sue him for. He was very relived that my spinal tap was normal.]

I guess the point I am trying to make is that this doctor had no problem suggesting to another man he was seeing for the first time that he, the patient, was a hypochondriac who had obviously been influenced by a movie/book.

Not following the later part of this thread well, but the initial question was why don't doctors listen to women. Well, because people in general don't listen to women! (Loved the video) And one of the most insidiously awful things about this illness is that, just as gains were won for women in this area after hundreds of years of effort, we now have a disease with symptoms that reinforce the stereotype that led to women being dismissed as weak and useless in the first place:

traditionally: women are emotionally unstable --> people with ME/CFS have systemic dysfunction that looks on the outside like emotional instability
traditionally: women are stupid and can't be educated --> people with ME/CFS have cognitive dysfunction that makes learning harder and information processing more difficult
traditionally: women are weak --> people with ME/CFS lack energy for the most basic tasks.

In short, doctors don't listen to women because these ancient ideas are hard to kill and our symptoms reinforce them. The fact that progesterone makes this illness worse is not working in our favour.

During the epidemics people who wee active developed ME while people who were not didn't; nurses and doctors, but not patients (who you would expect to be debilitated) trainee teachers, not nuns and so on.

This matched things observed with polio so the theory was that exercise was somehow involved in the disease establishing itself.

This leads to the thought that people who force themselves to carry on when ill are more likely to develop ME. This would lead inevitably to women being more likely to get it. It is just a simple fact that women with children have to look after them no matter how bad they feel. I am not saying anything about men being lazy or any other stereotype, just that this is the way the world is and could explain an imbalance in the figures.

Personally, I think it is often much harder on men to get ME/CFS. Women are often seen as being "weak and neurotic" which is infuriating but we are used to it. One medical article in a Sunday newspaper described ME as "something experienced by middle aged women with psychosexual problems" Well that was us told!

However, men can feel suddenly diminished in their masculinity and demeaned, personally. Not only are they treated as malingerers but they are acting like women! Shocking!

I felt very sorry for a friend with ME who was having to move house to a flat with no stairs. He was very upset by the way the removal men looked at him as he sat and watched his wife carry boxes out to the van. As usual with us he didn't look ill, but like a big strapping bloke making his little wife do all the work. A women in the same situation would have looked like a pampered pet.

The "housewife" may be looked down on but is a recognized part of society, the man who doesn't work is seen as a waster.

During the epidemics people who wee active developed ME while people who were not didn't; nurses and doctors, but not patients (who you would expect to be debilitated) trainee teachers, not nuns and so on.

This matched things observed with polio so the theory was that exercise was somehow involved in the disease establishing itself.

This leads to the thought that people who force themselves to carry on when ill are more likely to develop ME. This would lead inevitably to women being more likely to get it. It is just a simple fact that women with children have to look after them no matter how bad they feel. I am not saying anything about men being lazy or any other stereotype, just that this is the way the world is and could explain an imbalance in the figures.

Personally, I think it is often much harder on men to get ME/CFS. Women are often seen as being "weak and neurotic" which is infuriating but we are used to it. One medical article in a Sunday newspaper described ME as "something experienced by middle aged women with psychosexual problems" Well that was us told!

However, men can feel suddenly diminished in their masculinity and demeaned, personally. Not only are they treated as malingerers but they are acting like women! Shocking!

I felt very sorry for a friend with ME who was having to move house to a flat with no stairs. He was very upset by the way the removal men looked at him as he sat and watched his wife carry boxes out to the van. As usual with us he didn't look ill, but like a big strapping bloke making his little wife do all the work. A women in the same situation would have looked like a pampered pet.

The "housewife" may be looked down on but is a recognized part of society, the man who doesn't work is seen as a waster.

Role on a test .......

Mithriel

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I agree this disease is probably hardest on individual men. But I also think that long term, unsolved, it sets the position of ALL women back, sick or not, because of the things described above and because of higher prevalence among women.

I also agree that behavioral differences will be part of the story once it is understood. I don't think this is the whole story though. I think it will turn out that hormones play a very important role. Progesterone in particular. We already know that certain hormones stimmulate xmrv. I think studying why and how and where will help explain the different prevalences among men and women.

rich
wouldn't you have to show that these snps occur at a higher rate in women with cfs than women in general to prove yr argument?

***Yes, and it would also be helpful to show that they occur at a higher rate in women with CFS than in men with CFS. Since these things have not been shown (yet!), this is a hypothesis, not something that can be considered scientifically proven.

so many of the snps implicated in this disease are so common, that it makes me wonder.

***Right.

i know the argument is that it's the combination of all these snps...clustered around certain pathways. that add up to a genetic predisposition to the illness ..but in the absence of comparative genome-wide studies, it's kind of a hard sell isn't it?

***Yep.

how many of the panels you have mentioned have you seen from women that don't have cfs.

***Zero. People have to have a reason to plunk down the coins, and the Detoxigenomic profile isn't cheap. Also, I study cases only of people who either have CFS or think they might. Maybe as time goes on the cost of looking at polymorphisms, such as by the major providers like 23andme, will get low enough that more people will have them characterized. There's probably enough data out there now to evaluate the prevalence of this combination of SNPs, but I don't think I would have access to it.

Does genovations share that info? Probably not, right?

***No, they don't. I spoke to the lab director about that when I was writing the paper in 2006-2007.

Having said that, wld your hypothesis explain why so many women with cfs feel worse when they are premenstrual?

***I'm not sure. That's one of the two times in the cycle when the estradiol level is dropping (and the only time when both estradiol and progesterone levels are dropping simultaneously). But there is also a big drop in estradiol level at midcycle, just after ovulation (progesterone is rising at that time), and I don't think women with CFS feel worse at that time, do they? So I think progesterone comes into the picture here.
I know that progesterone has sometimes been called the "feel good" hormone for women.

***One question to which I have not been able to find the answer is whether the changes in estradiol level in the cycle are purely the result of changes in its rate of secretion by the ovaries, or are there also changes in the rate it is broken down (metabolized), such as by varying the gene expression of the detox enzymes that metabolize it? If the latter is true, and if the rate of metabolism of estrogen increases premenstrually, then I think I could make a case for this set of polymorphisms being responsible for many female PWCs feeling worse premenstrually, because there would be a higher contribution to oxidative stress at that time. Otherwise, I don't think this would explain feeling worse premenstrually.

***Not being a woman myself, I have no clue how this feels, of course. My impression is that PMS is an issue for many women who don't have CFS, but I don't know whether PMS in a woman who doesn't have CFS bears any resemblance to what goes on premenstrually in women who have CFS. Maybe you and/or some of the other women here can enlighten me a little about how it feels in these two situations -)!
This is probably like trying to describe colors to a person who is colorblind!

***I've done a fair amount of digging in the literature about this, and have not found anything. It may not be known. There appear to be a few mysteries remaining about the menstrual cycle and what causes what there. I would actually like to understand this whole area better. I don't think the interactions of the HPA axis dysfunction and the reproductive steroid hormone cycling in women, especially when menopause starts coming into the picture, are very well understood in CFS. This is pretty complex even when CFS is not part of the picture.

***I think that the late Dr. John Lee made a big advance when he emphasized the prevalence and importance of estrogen dominance over progesterone in many women, and I think Sabre Sciences has the right idea when they emphasize working on the low cortisol problem before boosting progesterone, because it will be diverted to making cortisol, but I think a lot of this is still a "black box." (I guess I should explain that that is a term from textbook problems in electronic engineering. The idea is that you are given a "black box" with a couple of electrical terminals on it, and it is specified that certain types of measurements give certain types of results. The problem is then to explain from these data what is inside the "black box." I'm suggesting that there is still a lot unknown about the menstrual cycle and how it works at a fundamental level, let alone what goes awry.)

As you probably know, "regular" mold illness (not complicated by whatever else is going on in CFS) is more common in women than in men too.

Your oxidative stress explanation seems to apply for that too.

But here's an article I found today that says that women were more likely to report effects on mucous membranes, which (I think) is less specifically related to oxidative stress.

Thoughts?

Best, Lisa

*

Indoor Air. 2005;15 Suppl 10:7-16.
Molds in floor dust, building-related symptoms, and lung function among male and female schoolteachers.
Ebbehj NE, Meyer HW, Wrtz H, Suadicani P, Valbjrn O, Sigsgaard T, Gyntelberg F; Members of a Working Group under the Danish Mold in Buildings program (DAMIB).
Epidemiological Research Unit, Clinic of Occupational and Environmental Medicine, H:S Copenhagen University Hospital, Bispebjerg, Copenhagen NV, Denmark. ne01@bbh.hosp.dk
Abstract
Five hundred and twenty-two teachers from 15 public schools, eight 'water-damaged' schools, and seven 'non-damaged' schools with no visible water damage were included in a cross-sectional design. Mold growth was assessed by recording the amount of dust on the floor and in the air in classrooms and the content of a number of mold species in the dust (CFU/g dust). The evaluation of health symptoms included symptoms recorded by questionnaire and spirometry, bronchial challenge, and CO-diffusion capacity. Nasal lavage fluid was analyzed for IL-8 and ECP. Personal and psychosocial factors were included as confounders. In this study population mucus membrane irritation symptoms (MMI) and general symptoms were reported more frequently by women than by men with odds ratios ranging from 1.4 to 2.1. Women's reports of symptoms from mucous membranes and skin and general symptoms were positively associated with mold exposure. Odds ratio for 'difficult to concentrate' after adjustment for confounders was 11.2 (1.4-90.1, 95% CI) at high levels of mold exposure. None of the lung function tests performed in this study were associated with mold exposure, to the 'water damaged' vs. 'non-damaged' classification, or to the symptoms reported. IL-8 and ECP were not associated either. PRACTICAL IMPLICATIONS: Psychosocial and personal reasons dominate in MMI and general symptoms. Headache and difficulties to concentrate associated with indoor mold exposure, mainly for women. No lung function impairment associated with indoor mold exposure.
PMID: 15926939 [PubMed - indexed for MEDLINE]

Rusty, i don't take too much offence - but a little
there are more women than men out there that have it. so maybe that's why the thread was started by a woman or there are more women whining? & i think it's pretty gender biased to say that a man wouldn't start this thread.

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my brat is coming out:

RustyJ - are you sure that I'm a woman?

serenity - so you think that women are whining?

to be clear, I'l repeat tomk's clarification (thanks tom) "Why Don't Doctors Listen to Women?" is the title of the article that Dr Klimas wrote for Ms.magazine. It does not necessarily reflect my opinion.

I'm not. My apologies for making an assumption, whether it is right or wrong, without adequate facts. My only defense - I confused where your comment ended and the article began. It was a flip remark to try to get a few alternative points across. Sorry if I have caused offence (unless it was a compliment?)

yeh i think so, i had almost forgotten already because i had put it out of my mind - but the last doc i saw literally said to me "i saw women like you back in medical school." he said it, can you believe?!
so you know, i think that is probably why the article that started this topic was written.
by the way, even i am tired of hearing about breast cancer - & i have a really good friend who just had a double mastectomy! please no one take offense of course i care about the disease, but the idea that we need any more awareness for it baffles me! i think we are aware of breast cancer by now. i think maybe some other diseases i can think of could use a bit more awareness, yes?

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I agree Serenity. We are all aware of cancers. Breast, prostate, ovarian, colon. We know you are there. Sometimes I really wish I had it, because it would be so much easier to weave my way through the health care system. See, cancer patients have a status. ME/CFS patients are still in limbo. And yes I know you can die from cancer. Duh.